When I write something, 99% of the time it is positive. Well as you could probably tell by the title, this post is going to fall in the negative 1%. Lately I have been frustrated and disgusted by a number of things so I decided to summarize them and vent a little.

I hate tripping over nothing.
I hate that I’m sick.
I hate how MS makes me feel.

I hate that I’m getting worse.
I hate that stupid handicapped placard.
I hate when people say, “But you don’t look sick.”

I hate that I can’t drive anymore.
I hate using canes, walkers, and scooters.
I hate how expensive medicine is.

I hate how hard it is to be declared disabled by Social Security.
I hate using adult diapers.
I hate that I can’t wear high heels anymore.

I hate that companies profit off of sick people.
I hate that the TSA checks my wheelchair before I can get on a plane.
I hate that I am tired just from typing this.

I hate that I am damn near blind in my right eye.
I hate that MS makes me hate.
I hate that I can’t do anything anymore.

About Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

200 Comments

Every now and again I just have to say I hate this disease and leave it there for a while. I hate the sway when I walk, all the meds, the being tired all the time. How when they find out I have MS they run for a medical book and pick out the worst case scenario and say that is what will happen. Hey it may not also. Had started seeing a guy and we were hitting it off when a family member showed him the worst case and he stopped talking to me for a while to take it all in. Thought I was going to lose this nice gentleman that arrived in my life. I can happily say we are still seeing each other but I see he is very guarded about the lrelationship. And all I want is normal. I guess that normals ship had sailed. I feel like I have to settle for that type of relationship, thank you MS! Nothing will ever be the same. But each day I wake up is a new journey and I live it the best I can. Best of luck to us all.

Thank you so much for this! I needed this so badly today!
I hate this MS too and it has been getting to me a lot lately. I hate that I’m just supposed to nonchalantly adjust to my “new me” every time pieces of the old me (that I wasn’t very fond of) have been preyed upon. I hate that I feel guilty for having so much already because I am lucky enough to still be able to walk unassisted. I hate that I feel like this disease is eating away at my cognitive functioning daily; multitasking is a thing of the past for me, memory skills are nonexistent, and concentration is like….oh look a squirrel. I hate thate that everything exhausts me and I still find it hard to sleep at night. I hate that my senses can easily become over-stimulated; my favorite escape of headphones and calming music is now almost painful. I hate that people at work don’t understand because “I don’t look sick”. I hate that migraines. I hate not knowing what’s coming next; what I’m going to lose full function of next. I already I hate my next new normal.

I hate MS too! I am a survivor going on 33 years. I am now 54. Still walking but with a cane out in public. I take care of my elderly Mother and still do many things with my grandkids. They have never known me not having MS. They are just now understanding my illness. I hate I cant do a lot of things with them. I love I am loved by all. That is what keeps me alive and going.
Love, prayes, and blessings to you..
Robin

JAT
Everything I just read made me Cry because everything u said I am feeling right now. My 11 yr old is the one who listens t me. After I preg with him my MS went into remission till about 1 month ago. I have to use a cane now Which he has never seen me use. He is a great kid. but like u I live on ssi/ss so places he wants to go to or have Is not in the budget. About 4 months ago I had to move in with my parents because of getting devoriced My parents don’t Have a lot either I was going to get a part job but then two new lesions on my spine that give me spasms that start in the middle of my back and go down my legs and loves to trip me or make me fall. So got to wait on that. Just to Know I am not alone Is helping me.

There are so many things to hate but so many things to learn from. I hate that I’m a young guy (40 this year) yet feel like I’m 140. I hate the feeling of having no control. I hated having to give myself injections. I love taking a pill now. I hate to make excuses of why I can’t do things, admitting MS is not easy to do. I hate when people tell me I can’t do something, even when they are right. I love that I have met amazing people along the way that I can call my friends. I love how there are so many good people that want to help and be involved. I am thankful for this posting to hear from others with MS. It can be lonely. This is a bigger disease than is given “credit”. I hate that there’s no cure. From a special lady I knew who said, “I have MS but MS doesn’t have me.”

I hate that I was correct in my earlier post
I hate that I didn’t know what was next but something was
I hate autoimmune diseases because they invite their friends
I hate MS
I hate Hashimotos
I hate degenerating spines
I hate streaks of lesions
I hate Dawson’s fingers
I hate that I am sad, moody and in pain so often
I hate that I never had anyone hold me, hug me and mourn with me at any diagnosis
I hate chronic profound pain and exhaustion and having to keep going
I hate that I am JUDGED, LABELED AND NEGATED

Until yoU said hashimoto I was not sure if this was me that was typing or someone else. I also am Cindy, with chronic progressive MS. I believe in Christ in all that I do yet I become depressed irritable and angry tired of putting up with others and yes there’s no reason, I am blessed, especially on thisOctober 911 I am reminded how much I have to be grateful for.
I hate filling out my insurance form.Telling them the same thing that I told them last year. I keep wondering what part of chronic or progressive do they not understand. I wonder what part of incurable is a foreign language to them?
I am grateful to have insurance to complain about.
I am grateful to have my scriptures before me, remembering all that others before me went through… MS is nothing in comparison. I am NOT scourged on a cross, I only fall and need to get back up.

i hate not being able to walk unaided
i hate that people around me just dont understand that dealing with this disease is hard
i hate being tired all the time
i hate not been puts on meds and told by doctors nothing will work because i have PPMS
i hate that i have to use a speedicath every time i wee
i hate that sometimes i cant spell, its too hard even to string a sentance together
i hate being alone
i hate that my partner sees me like this every day
i hate the temors that i get
i hate that im to weak to horse ride
i hate the pain in my head and the hangover feeling
i hate that i had to beg a doctor for pain medaction, i hate ms,

I hate that I feel mad at least once a day.
I hate that I am misunderstood by the one’s I love.
I hate that I don’t feel sexy anymore because I feel awkward and worried about balance.
I hate that my daughter at 10 years old has to text her friends that she doesn’t have time for their drama because her mom has MS and she worries about if I will live.
I hate that I forget everything and feel like I have accomplished nothing.
I hate that if I share how I feel, I am complaining and not just venting to feel healthier.
I hate that I can’t be everything to everyone anymore.
I hate that I have to start asking for help and depending on others.
I hate having to even type this as it has defined my life…a different life.
I hate the unknown,
I hate the uncertainty of what pain I will feel later today or tomorrow.
I hate having my family feel so lost and sympathetic to me.
I hate the “But you look good though”.
I hate having to disclose for people to believe I am in need of accommodations.
I hate having to realize I am handicapped/disabled and labeled.
I hate stilletos and all these too high shoes that I can’t wear.
I hate tripping over nothing and unsure of my balance.
I hate MS hug.
I hate that I hate!

I hate MS, but
I like that people with MS who share so others like me understand better.
I like my friend tells me what she needs.
I like that my friend just walked ten feet without any aids.
I like that she and you keep trying.

Nicole, l love the I hate list. You are so right, we must acknowledge our feelings, then move on. It’s like quitting smoking with the comment “I don’t want one”. So untrue. Of course, I want one. But, will choose not to have one. So it is with MS. We hate it, but choose to deal with it with a positive attitude.

Was wondering if you could help me login so I can comment on Multiple Sclerosis.net. I registered, but when I try to login, it tells me invalid user name.

Jackey, Yeah right. You have to technology by admitting it. I think it kind of loses its grip on you in the way or at least loosens it!
I’m not quite sure what’s going on with multiple sclerosis.net. maybe try giving it a day? then get back with me. And I’ll look for the into it.

I hate when some people do not understand what we have to go thru to get thru the day!
An they come home from work and o not ask how our day was, but ask why a certainth was or was not done, or why did you do t that way and……………..

Dr. Rosa treated me and my cervical spine was put in the correct alignment, non invasively. The result was that I got my eyesight back, feeling in my abdomen and fingers returned within a couple of weeks. It has been 1 1/2 years and I am still getting some things back…in February I could form a whistle for the first time since 1988. Recently, I noticed I could feel when I had to urinate …. I had lost the sensation about 15 years ago. Now, I still have MS. Since Dr. Rosa aligned mycervical spine, the rest of my spine has been fighting it. I now have a presentation of scoliosis in my lumbar region and it makes it more difficult to walk. I am working to find a physical therapist who can untether my lumbar spine. I am optimistic that I will be doing much better when that is accomplished.

I hate being wiped out for 24+ hours after mowing my yard.
I hate being active on Saturday or Sunday but not both or sometimes neither one.
I hate becoming confused and feeling many years older than my actual age.
I hate realizing that my world is shrinking while my friends’ lives are growing.
I hate the sad face a friend gets when they finally grasp how MS has started affecting me and understanding that I’ve not been making it all up.
I hate how careful I have to be when going down steps and sometimes going up them.
I hate planning a DIY project only to lose all my energy after 5 minutes.
I hate people thinking that I am overplaying my illness.

I hate the fatigue stopping me from doing the simple things with my family
I hate not being able to sleep thru the night
I hate all the medicine I have to take because of MS
I hate that I’m not able to work anymore
I hate the fact that MS is complicated and incurable
I hate that MS entered my family in such an ugly way
I just totally hate MS

Thanks very much Nicole for this post as I do think we each think we are alone with this MS demon we battle. If I start to list each item I hate about MS well the Google sever might crash! Just top 5 hightlights would be that 1) I am unable to be the same person I wasbef,even though I can look back and see it startedin the ’90s. 2) Fatigue! What I’d give to know from 1 task to the next what I could truly manage!

I hate feeling alone
I hate not being mobile
I hate being confined to my room
I hate asking others for stuff
I hate not being able to do what my friends do (The ones I have left)
I hate needles
I hate MS hugs
I hate diapers too
I hate not being an active mom like I was
I hate having my son see me like this
I hate the new me
I hate MS

i hate pain,i hate neddles, i hate medicene, i hate to feel tired, fatigue and i hate people when look at me and said you look great i hate feeling alone , hate not to be able to doanything on saturday, i hate ms.

My heart aches for each and every one of us living with this horrid disease. :(. So many plans for the future wiped away… Maybe y’all can tell me how to rid myself of this one hateful memory?! As my husband and I were splitting up two years ago, he spitefully said he was so sick and tired of seeing me in bed! This has haunted me since our divorce! I hate knowing he’s snow skiing with his new girlfriend. I hate knowing he’s taking her on trips and vacations! I hate that I can’t cook, garden, read, cross stitch, do family research, attend college sporting events, band events, concerts… I hate that I even still exist!!

Oh honey. Our bodies are just vessels for our souls. Your mind is still intact. Through it and with it you have so much to give. And there are many out there who will and do appreciate it.

I too have MS (27 years now) and go through those same thoughts from time to time. I use a cane, a KAFO, a scooter, a power chair, a wheelchair. I don’t like it one bit, but am glad I have them when I need them. I hate many, many things about having MS. Then I look at the beauty that surrounds me and am thankful I’m here to witness it. I bird. A bug. A flower. The clouds. The sky. The stars. Hearing people laugh. I can still laugh. You can still laugh. Laugh!

I guess we each need to still be around for the other person that also feels there’s nothing good left to feel, or successfully accomplish. Our pain gives us the courage to take it one step further. Listening to another person say how they made it through this moment reminds me there is a reason to still be here. It Is’nt all about me. Thank you for The reminder:-).

I hate not knowing how I will feel when I wake up
I hate the feeling of pain when I open my eyes
I hate that sometimes I get double and or blurry vision
I hate I get anxiety when I’m in the car
I hate the days when I can’t drive
I hate that I’m scared to drive
I hate that I can’t walk my dogs
I hate that people don’t understand
I hate that people don’t take the time to understand
I hate that I have family members that don’t treat me like family
I hate that I’m legally disabled
I hate that I had to leave the job I loved
I hate the fact that I hate so many things
I hate that my memory isn’t that good
I hate that I have limited energy
I hate having epilepsy
I hate having MS
I hate that writing all this I need a nap
I hate that I’m different
I hate that there is no cure

I, too hate MS,and hate everything that u all hate. Since I’ve been dealing with MS for 25 years all I can say is that it has gotten better for me cuz I made it better…remember always think positive that is the key…GOOD LUCK:-)

I hate that I was diagnosed when I was twelve.
I hate that I couldn’t do what everyone else did.
I hate that nobody could understand.
I hate that I was bullied until my last year of high school.
I hate being called lazy. I hate being too tired to argue.
I hate that I can’t go outside 80% of the year in FL.
I hate that I loved being outside.
I hate the Office for Students with Disabilities at school.
BUT:
I love who I’ve met because of MS.
I love who MS has forced me to become.

I hate not being able to make it through one of my son’s soccer games
I hate turning to jello in the NC humidity and heat
I hate not being able to enjoy the beach with the rest of my family
I hate not being able to talk to family members because they are in denial of my disease
I hate not having a real reason for why I limp
I hate bumping into walls
I hate that I have body parts that are in worse shape than someone twice my age
I hate that I cannot go to the Dr and come out knowing that my problems will go away soon
I hate that I have something in my life to hate!!!

I hate MS too!
I hate how other people treat us
I hate how it (MS) breaks up families and alleged friendships
I hate how the medications for this stupid disease makes us feel
I hate the pain caused by MS
I hate that I can’t type more because of the pain in my hands!

I hate having to ask people for help.
I hate being broke.
I hate that I haven’t been able to drive since my son has been 2 so we never got to do a lot.
I hate when we watch some home movies I see a little boy at Christmas opening presents while his Mom is laying on a couch with a Solumedrol drip hanging out of her arm looking half dead.
I hat prednisone. There said it. I hate that evil drug. I hate the way it makes me feel, look and behave. I hate the fact that I don’t blame anyone who hates me on the drug. I hate that I am on it currently, the fact I freaked out on my now ex fiancee on it and I think I lost him over a drug that drives me psychotic. I hate the fact that is what finally made him decide that there is to much drama and end it. I hate when I get off it and taper I will realize all the more exactly what it cost me. I hate the fact that there is nothing I can do about it.

I hatte prednisone too… so much… HATE it..!!! It caused me to have brain surggery a few months ago and I won’t takke it again. Prayyign that this dam diseass doesn’t make me have to take it aagain. And I hate beign broke too… hate not being able to take my kids to dinner for a treat.

I know this is late but I just discovered this blog so I decided to contribute–

I hate that I’m not even 21 yet and I feel like I’m 80
I hate that I keep getting put on steroids for MS attacks that make me gain ridiculous amounts of weight even though I’ve been striving for years to lose it and was finally successful
I hate that everybody keeps saying, “You’re going to be fine, you just have to make some changes”
I hate that everyone assumes it’s so easy to change my life
I hate that I have to take the LSAT with brain damage due to attacks
I hate that I’m always so tired I can barely move, even when I’ve just woken up
I hate that I can’t dress up and spend a night out with my friends, so they rarely invite me anymore
I hate that my parents look at me with pity now
I hate that despite my fear of needles I injected myself daily for 4 months only to find that I was allergic and had to find a new medication
I hate that I’ve fallen into such a deep depression that I don’t recognize my external or internal self anymore
I hate that my doctors took me off pain meds due to possible allergy implications so now I’m stuck dealing with all the pains from MS without help
I hate that I might be sitting in my room and my leg or arm will twitch randomly
I hate the pins and needles everywhere
I hate that I have to carry around a pill container for the week when I’m still in college
I hate that I’m a complete klutz and trip all the time and have no idea if it’s me or MS
I hate that I stop in the middle of a sentence because I have no clue what I was already in the middle of saying
But most of all, I hate that nobody I know is going through this with me, and that even though everyone around me desperately wants to understand, they don’t.

I hate the sadness on my parents face when they see me stubble
I hated telling them I had this fn disease
I hate not knowing how this disease will attack me next.
I hated wearing an eye patch for 3 months because I am steroid immune and had an attack of optic diplopia.
I hate the insurance co. for refusing to pay for the electronic stimulus that helps me walk steadily.
I hate the ugly foot brace the insurance company will pay for
I hate that MS meds are so expensive
I hate being young and disabled
I hate being confused or forgetful
I hate tripping on my words
I hate having to constantly laugh at my stumbles and falls because others panic.
I hate not knowing how I got this disease with no prior family history
I hate the possibility of knowing that it is possible my son is predisposed to this disease because of me.
I hate that my husband still chokes up at my neurology appts even when things are status quo
I hate this disease is affecting so many of my friends.
I hate that its just easier to lie about why I limp to avoid others pity especially that I am happy I could be worse.
I hate when my leg twitches for no reason
I hate not being able to do some of the simple things I used to do with ease.
I hate having constant pins and needles in my dominant hand
I hate having no strength in my right hand
I hate complaining especially knowing I am one of the lucky ones
I hate hating

I loathe hating but do and hate that
I hate that virtually no one believes me
I hate that my family turned their backs but for my son
I hate that my mother loves how ill I am and works tirelessly to make my life worse
I hate being so poor and will soon be homeless for the second time since dx in 08
I hate being told I’m crazy when I’m sick
I hate pain, fatigue, stiffness, body falling apart
I hate I lost my home, money, job and most of my family
I hate I can’t work
I hate that I went through every MRI, Lumbar Puncture, diagnosis, procedure alone…
I losing respect and friends I once had
I hate losing the critical thinking, memory I once had
I hate always trying and trying and working to stay healthy and put on a good face when I always am suffering
I hate not being able to do things
I hate that my family had a secret Christmas without me in 2012 and hate that I hate all holidays now
I hate watching my life and body fall apart
I hate that I am very close to not caring what’s next
I hate I spent years loving, giving and helping to my own detriment
I hate my circadian rhythm
I hate that most of the people I loved the most are gone
I hate that I don’t trust anyone/thing anymore but for a few
I loathe most medical professionals especially as they didn’t mention how huge my lesion was, how many or that i have a brain cyst…not important?
I hate that I feel like no one….like when my mother said she was forced to have me i want to scream then why did you? so I can tell you how great you are for 40 years then die slowly while you enjoy it?
I hate being below Maslows Hierarchy of needs all the time
I LOVE myself but I have been smart enough, creative enough, worked hard enough and have been strong enough to still have good times and have had hopes for the future and HATE i don’t feel I can battle one more day…
and like all of us, I will face today and tomorrow with all I have and try to be happy even though I all I do will be sad-packing to move, finalizing my dad’s estate, and making plans to get far far away from a place that has only bad bad memories…there vented, purged, facing another painful day body, mind and soul. I must ADD I LOVE the few who stuck with me, you’re angels…..

I hate that even my family thinks ms is no big deal b c it’s not cancer…I hate that they tried to suggest I was an addict c bc I have to take narcotic pain medicine…I hate that they don’t realize when I have to cancel plans it’s not b c im lazy….I hate being so tired all the time…I hate that I can’t do things I used to do like workout I can’t even walk upstairs w out almost passing out …I hate when people say we r feeling sorry for ourselves bc so many people have it so much worse….I know that but ms is progressive and unpredictable one day I woke up paralyzed in my legs and a bladder that just shut down I hate that no one believes me….I hate canes wheelchairs walkers especially when I’m only in my 30’s….I hate how showering putting on make up getting dressed takes every ounce of energy I have…I hate when people tell me I look fine I can’t possibly b sick or I need to get out for walks more or eat more…I hate that people judge what they don’t understand!

I hate that this disgusting ruthless disease continues to take another piece of my mother just as soon as she adjusts to one loss, I hate watching her fear and humiliation when carried out of of house because we don’t have a ramp and she musters her strength and her smile to come here and visit with her grandchildren , I hate when I visit and sort thru mail on a we’d and go back the following we’d she was too tired or depressed to make a few calls to follow up. I hate that my mother who wi
L always be the most beautiful lady, the most courageous, the most positive and motivated person I know seems Defeated and moans with pain when her legs won’t stop tingling or can’t move her body to get relief. I miss my mom and hate she is suffering

I hate that you have to hate all that as well. My Mother and I both have MS and I hate that my son and my father have to see it. I do love the fact that you have a wonderful mother and she has a loving daughter!

I hate that I have experienced pain so intense in my eyes, and limbs that it made having kidney stones and a hysterectomy seem like they only needed a little band-aid to cure that discomfort.

I hate that it was probably the participation in clinical trials a decade before to “cure” my psoriasis that has been blamed as the biggest contributing factor to me developing multiple sclerosis.

I hate that I no longer have the capabilities to continue my career, have been labelled as disabled by the government, and due to the fact that my latest symptom is cognitive (loss of concentration and usage of memory – there is no hope to retrain me by the government)

I hate that since my memory left me, I can’t remember anything for the past 18 months of my life unless it is written down in a journal, a picture was taken AND I HAD ENOUGH OF AN EMOTIONAL CONNECTION TO THE EVENT TO NOW REMEMBER IT WITH ONE OF THOSE existing documented reminders.

I hate that having decided to use my artisitic side, and fine motor skills I was going to take the hobby of making jewelry into a little business to feel like I once again had purpose and worth in the world.
I really hate that after investing in materials for this dream, that the MonSter decided that I didn’t need the functionality of my left hand.

I hate that my previous co-workers seem to have forgot me, and do not return calls. I hate that my friends and family walk on either extreme line – that I look to healthy to be sick, or since you are sick why are you out doing things.

I hate that one day I can wake up and feel like the normal old me, and then am exhausted and crawling back into bed after only having a shower and brushing my teeth.

I hate how much drugs cost, I hate that I am getting more depressed, I hate how long it takes to get to see a specialist and that they see only one non-working part of me, not a whole person.

I hate living out in the middle of nowhere in a beautiful home that I have no support from my husband and his successful career, and have to make a plan on taking my pills to manage a schedule if I want to drive 45 minutes to grocery shop, swim in a pool, or visit my favorite bead store.

I hate and having a hard time adjust to not having a pay-check that allows more than making monthly payments on a vehicle.

I hate that I see more fault with what I have in life that I do the good.

Wow!! Looks like a lot of us have a lot of “Hate” for this disease. Well, include me in!

I hate that I am not SPMS!
I hate there are no meds once your out of RRMS!
I hate that I may not dance at my children’s weddings!
I hate I may never see my grandchildren!
I hate to watch my husband do everything around the house!
I hate that taking a shower consumes every bit of energy I have!
I hate missing out on so much in these “so called Golden Years”
I hate sitting on this sofa “every day/all day”

You are my kind of gal. I hate everything that comes with MS. I tell myself everyday You MS, will live with me I won’t live with you, but I still continue to hate it. I miss who I was and now I am having to learn who I am all over again. When I read your post I thought to myself now there is a gal who truly gets it. People have no idea, because they say, you look so good, I hate that phrase, and when I say I am tired, they say I know what you mean, NO THEY DON’T, and that makes me angry. Keep up the good work here, I truly enjoy your site and I will be commenting as you relate more information. God Bless.

Just found your blog…already a fan! Can’t say as I have any thing new to add, although one thing comes to the forefront.

I hate it when I dream about my ‘preMS’ life and my body is whole and healthy and all is restored. These halcyon glimpses are like pouring acid on wounds that stand little chance of healing. I gave up my dream career five years ago…isn’t it about time for my subconscious mind to stop tormenting me with what could have been!

Janine, I’m glad you found the site! I do apologize for taking so long to reply. Well welcome aboard and I release new posts on Tueadays. The very samethings happen to me and my dream career! I had a dream about it last week from which I awoke in tears. But most nights are not like that. Thank goodness!

I hate that I have to plan everything I do so I don’t run out of spoons
I hate that I just had two weeks leave and didn’t really do anything
I hate that my bed now has a dent in it I spend so much time there
I hate that I’m looking for ‘wedding crutches’ to walk down the aisle
I hate that two year olds walk better than I do
I hate that my career has been scuppered thanks to this stupid disease

Ahhhhh, the darkness only way to get out of it is to shine some light on it, let it out where people understand what the heck your going through. I have become obsessed with making eye contact with others that are limping, i want to run up to them and say omg do u have ms? Please say you have ms, please hug me and tell me you understand and i am not all alone! Heres a hug for you sweet nicole, thank you for shining a light in the dark. Thank you for letting it out i needed to scream this we too! Luv, peace, and light! Xoxo Olivia

You are not alone. I too wonder why someone is in a wheelchair? I can still walk with a cane but I feel I can relate.

I sit in the handicapped section when I go to concerts. I do ask what the other peoples problem are and a lot of the time it is MS. There is a common bond as we understand the difficulties of life with a handicap.

I’m scared because I’ve just been diagnosed with MS.
I’m doubtful of the medical profession that suggested I was highly strung. I’ve been debating a diagnosis with them for 6 years.
I’m happy I ignored them and started nutritional therapy 6 years ago.
I love that I’m 30 and back at University to finish my degree but I hate that my concentration and clarity is fading.
I love that I live in a woodland yurt half of the time running a conservation and community project off the grid.
I hate the possibility that MS might stop me living so freely.
I hate the itching I get under the skin on my head and the burning sensation on my face.
I hate the creeping feeling on my arms.
I hate the flashes in the corner of my view and the feeling that I have a membrane over my eye.
I hate the weak bladder, especially at 6am on the London underground after a reggae party when all the city people are heading to work.
I hate the cloudy thinking and the short term memory loss. Just little things like my pin number or suddenly not knowing how to get somewhere I’ve been a hundred times.
I hate feeling like I have a spring in my leg and that I suddenly can’t figure out how much pressure to apply to my step.
I’m scared of the nauseating vertigo I had for nearly 2 months, I don’t ever, ever want that back.
I hate that my boyfriend is angry that I’m angry.
I hate hearing him say I’m giving him a hard time.
I hate that I now feel I have a monopoly on the hard times.
I hate hearing myself talk this way.
More than anything. I hate being alone with my body as it attacks itself.

Welcome to the club nobody wants to join. I am sorry you are so scared and I wish I could tell you can overcome it, but I am scared and I have had symptoms since 94 diagnosed in 05. I don’t think it is possible not to be scared, you learn to control it and live with it.
In a strange way you get used to it. We have no other choice.

you are not alone have faith that you will adjust and enjoy EVERYTHING that you are still able to do..Don’t let fear and worry lead your day…I know its not easy but I speak from walking the same path you are on….

I understand how you could feel that way and I hope it helps to vent. I hate having to see my beautiful daughter sitting in the wheelchair (stroller) when she should be out with her husband or friends.
I hate seeing my daughter so dependent on others for even simple things most take for granted.
I hate not knowing what I can do to make things better for her. I’m supposed to protect her from all the harm.
I hate seeing her face when she has to ask for help to move her leg.
I hate that she can’t skate, run in the park, or ride her bike.
I hate her having to take all the various medications, later to find out that the medications have caused other problems.
I hate the stress that she has just trying to get through the day.
I hate that my sister is not here.
I hate that my faith has been tested, and I think I have failed.
I hate that my venting may not bring a change.
I hate how people stare, but don’t ask why is she in a wheelchair.
I hate how using the bathroom in public places is so inconvenient, and the stalls are so small.
I hate she has to make sure that her chair can fit where she wants to go, or not be able to go because the chair can’t go up the stairs and there is no elevator.
I hate that MS has taken over her life.

Just discovered your blog and I’m grateful for your efforts. While I can’t disagree with any point in your “vent” since I’ve experienced the thought of them all. Getting such thoughts and feelings out sure lessen their load for me. When I was first being diagnosed in early 2006,one highlight of my week was to be well enough to make it to church! One Sunday, still before I began treatment, I was grumpy to say the least because I was almost too sick to make it and my tremors were so bad that I could hardly stand it but made it to one of the last available seats. However, there were 3 remaining chairs available just in front of ours and just as I finished complaining a young mother & father came to sit with there teenage son who had a severe case of Parkinsons, and they were all smiling. Well not only did this make me cry, it taught me that there is always somebody in worse shape than me. Lesson 2 came about 6 months later when I met Paul Vavoichech (sp?) for lunch. Paul was born without arms or legs and travels in a stroller. He’s probably in his mid 30’s and was on of the most inspirational people I’ve ever met. His story is out now in book form and is titled “Life without limits”. From that point I decided that compelling was not going to be part of my disease or it would help it rule my life. While I have lived every day with similar issues everyone with MS share, I’m careful to discuss the negative aspects of my disease with those close to me or others with MS because I have to get it off my chest as well. So thank you for providing a platform to communicate with birds of a feather and I look forward to catching up on all your previous postings in hopes of learning something to help me better manage my life and disease. Have hope and be encouraged, we are part of a chosen group that may one day help the world be rid of a terrible disease!

Thank you, tc.
I am a dad in exactly the same position that you describe so well and so movingly.
This is heartbreaking for everybody Nicole, you have obviously touched a nerve and a deep place in so many folks with your “list”!
Thanks for your courage!!

I hope venting helped you. I get mad then I think of my sister who passed away in 2008. Her diabetes took both legs and one eye and blinded her other eye. She had severe pain in her legs which were gone (phantom pain) and no feeling in her hands whatsoever. I think of the years she suffered and I tell myself I am fortunate. Medicine given me made me worse and more symptoms. I wish there was a cure for all. I pray someday it will happen.

Wow, something must be in the air. Heck I posted about not being able to think on another board, and people thought I might be suicidal, so I’ll refrain from posting it here.

I hate my increased difficulty putting together coherent thoughts when I am stressed.
I hate applying for a job through the disability office.
I hate thinking of myself as disabled even knowing there is no shame in it.
I hate the stress of feeling like I should be doing so much more.
I hate the stress I put my wife through.

I hate that my last post was submitted before I was finished! I wanted to add that while I hate that I no longer walk the way I used to, can’t do all the things I used to, can’t even wear the kinds of clothes I used to, I was thinking the other day that where I am now, I’m. thankful that I can still do some things, even if I do them REALLY SLOW. I”m thankful for that, and I believe we’re closer than ever to a cure. That’s the hope I hang onto that keeps me going.

I also loved this post. I hate many of the tbings you and others said. What I hate the most are the strange looks I get from people when they see me coming with my weird walk. People at work who know me give me a secretly sympathetic look, trying to be friendly without being obviously curious about my condition. People who don’t know often just stare and wonder what the hell is wrong with me.

i hate every single blasted thing about it…. and i hate knowing there’s not a ding dang thing we can do about it… and i hate that research is waning and we are going to be left with very few trying to figure out what the hell is going on here….

after reading everyones posts,makes me think. so im not the only one who feels like this, the need to vent (,always do it to people i love) and people who do not have ms can not fully understand the way we feel .family friends cope in there own way with dealing with it , people with ms cope much much more differently ,some people dont understand how hard life is,the simple things like ,walking without aid ,working ,wearing high heels, dealing with so many headaches,tiredness ect…….. i can go on and on . i cant do the things i used to do and it pisses me off…..rightly and it pisses me off that im still waiting to talk to a ms doctor and all the fears of the unknowen

Iy hate that my husband has to do every single thing that I should be doing. I hate that he has to clean the house, fix dinner, make our bed, do the laundry, by the groceries all on top of his full time job.
I hate that I watch my life go by from the side lines.
I hate that I can no longer volunteer at my six year olds school.
I hate that I can’t wear heel’s, can’t ride a bike or take a walk with my family.
I hate that I have to ask for help, ask others to take me places.
I hate thawt I can’t walk on the beach or stand in the ocean.

I love this piece. I can see by the number of responses here that you touched a lot of people, myself included. I feel the same sometimes. I cried like a baby when I realized I had to quit working because of the disease. It seems as if no one but another MSer understands where you’re coming from. I also hate the phrase, “but you look so good.” It’s all invisible handicaps for me. No cane for my brain which follows it’s own direction more times than not.

I hate dealing with the numbness, tingling, and pain that occupies every crevice and second of my existence. I hate that I can’t play with my boys any more. I hate that I get up & get dressed just to feel like going back to bed. I hate having to ask for help every second of every day. I hate being so young, 35, & feeling sooo old! I hate that I have to travel through such beautiful mountain scenery & know that there is very little hope for me to ever have the chance to explore them. I hate feeling like my dreams, goals, and hopes have all been stripped away from me just when I was reaching out to grab them. Most of all, I hate feeling so much hate & anger that causes this dark, black growth that began to grow inside me when I acquired this parasite we call MS.

I hate that I’m a burden to others. So I’m finding ways to use my skills and make a career for myself despite my illness. Some days I’m scared that I won’t be able to do it. Still, I’m taking every step I can on every front to make me a stronger me so that I can face tomorrow in a better way.

I hate that it’s a downward slide into an early grave. But ya know what? I’m bigger than that. That’s just one small, tragic fact of my life. But every great character has flaws. Otherwise, they’re just two-dimensional. It’s our battles that make us mighty. And I can make this look awesome.

I hate that some days I’m just an inconsolable mess. Yeah, I just have to bite the bullet that sometimes I SUCK. But that’s human, right? Sometimes the only way out is through, and we pray for forgiveness on the other side. And we can laugh at ourselves. Laughter always helps.

HATE IS A VERY STRONG WORD, BUT NECESSARY TO DESCRIBE MS. I ALSO HATE THIS DISEASE & WHAT I HAVE BECOME WHILE MOURNING WHO I WAS OR MAY HAVE CONTINUED TO BE. SOMETIMES IT IS GOOD TO VENT…BETTER THIS WAY THAN TOO TAKE IT OUT ON THOSE WE LOVE!!

I JUST GET SO DISCOURAGED BY ADS THAT MAKE MS SEEM LIKE IT’S CATCHING A COLD. IT’S NOT & THERE NEEDS TO BE MORE OUT THERE THAT PAINTS THE “TRUE” FACE OF MS & NOT SOME ROSY PICTURE OF IT OR WHAT SOME DRUG COMPANY WANTS YOU TO THINK IT WILL BE LIKE. THAT IS WHY I LIKE TO READ YOUR SITE; IT TELLS IT LIKE IT REALLY IS BECAUSE IN THE END WE ALL HATE WHAT IT TRULY IS. KEEP ON BLOGGING NICOLE; I LOOK FORWARD TO YOUR POSTS EACH WEEK & VENT ON!

I hate how white I am because I cant stand the heat so I tell friends “no” when they invite me to the beach. (Yes, this is suppose to be funny! I am as white as a ghost! Laugh!!)

I hate being depressed. Sometimes for no reason at all and I cant explain it or why.

I hate that I get frustrated over everything. Sometimes for no reason at all.

I hate that I dont know anyone personally going thru what I am to talk to. Its so hard to explain to family and friends what I am going thru, I dont want to bother them, them be sad, or them feel sorry for me.

I hate how people say sorry and I dont believe them because how can they be sorry when they dont have a clue whats going on with me?

I hate being so tired I dont feel like doing anything but I feel worse when I dont.

I hate how people tell me that I need to “rest”. I dont want to “rest”, all I can do is “rest” and I am still tired and I still cant feel my hands or I still cant walk.

I hate how I cant sleep at night even tho I am beyond tired for words.

I hate that I worry about waking up the next day worried about if I am going to wake up and being able to walk or feel my hands.

I hate how I forget things that happened just 5 mins ago but feel dumb asking again.

I hate using my walker because I am 21 yrs old and I feel like I shouldnt “have” to use one till I am “old”.

I hate how steriords make me feel and what they do to me. How emotional I am all the time, how I gain weight like crazy, and how I am just in a “bluh” mood.

I never REALLY knew what the word HATE meant till they said I have MS.
I could go on for days saying why I hate I hate having MS but I believe God made me for MS, for some reason or another.
But the biggest hate is:
I hate how it makes my friends, family, and babies (my dogs!) feel. I know they get emotional, frustrated, etc. for me and all the issues I have with my MS. They are the most important things in my life and I pray for a cure so no one will ever have to go thru the things I do. I pray no friend or family member ever has to hear that someone they know and love has MS.

I am not good with expressing myself on how I feel thru spoken words but thru written word is a little easier for me. These are my deepest secrets that I have never known how to express and I am happy I can finally share them with people.
Thanks for letting me vent!

Jessica,
You are always welcome to vent to me. You can even reach me through the contact me section. I understand and believe too that as horrible as it is I do have it for a reason unknown to me. Thanks for reading and do know that I release new posts on Tuesdays!

It’s awful that SO many loving, caring,talented and formerly hard-working people are struck down in their primes and once-happy folks are shunned by so many “friends, neighbors and supposedly loving family. We are not contagious and need those people to accept us as we are; we did not ask for this nor expect it! HATE is a terrible word and wasn’t used in my vocabulary much…before…..but I hate this blasted MS and what it h as taken from me! We all had plans of things to come, I’m sure….and I had worked so long and hard for others to have not only what they needed, but wanted, often; now I’m discussed “over”, left out and made as an excuse if someone needs one to get out of something. I am me! Hello, still in here, but trapped in a body that simply won’t allow or cooperate with what I’d truly love to be doing!!!

MS- I HATE YOU FOR TAKING AWAY MY ABILITY TO FEEL STRONG AND CONQUER THE WORLD.
I HATE THAT I CANNOT GO FISHING ON THE OCEAN, A ROWBOAT ON A LAKE DOES NOT CUT IT.
I HATE THAT I HAVE TO GIVE UP TRAVELING. NOT MUCH FUN STAGGERING ACROSS THE CASINO FLOOR WITHOUT A SOU TO DROP IN A SLOT MACHINE.
I HATE ASKING FOR HELP.
I HATE THAT NO ONE CAN FIX ME AND THAT I CANNOT FIX MYSELF.
YET WITH ALL THE HATES, I DO NOT HATE MYSELF!!!!

I also hate MS, being disabled, not being able to drive, lack of energy, not going into work etc. but…
Because of MS I’ve created ny own website (www.aid4disabled.com), I can now play bridge, I can be at home with the dogs, I now know my neighbours a lot better, I now go to the shops, I’ve met new people
MS is a horrible disease, I make no bones about ir, and you have said manby of the thingsthat are horrible about it but I believe that it is vital to look for the positives and be positive.

I hate that Ive read places where diets can heal and yet I dont change my diet.

You know what I hate the most?

I hate being hateful.

That’s a piece of a poem I wrote 5 years ago, but I still feel like that sometimes. I would add three lines now though:

I hate that my bladder function seems to be slowly leaving me, Im not even 35 as yet…

I hate that I don’t really have any friends anymore

I hate being lonely

I hate feeling like I don’t have dreams and goals anymore

Thanks Nicole, It’s so nice to have a place that we can vent about things every now and then.

If I can say something to DeeRob – I don’t know you, but I knew my mother who also had a chronic illness – your girls will never see you as anything but their strong can do anything mom. You’ll always be their strong can do anything mother.

I hear you, Nicole. I don’t usually use the word hate … it is such a strong word, and seems the most un-retractable word. But I understand your total frustration that has to be released now and then, and the internet blog is the perfect place to let it out with people who do get it.

I just saw the lawyer’s add a moment ago saying that ‘if you’ve been refused social security assistance, call me…’ and I’m angry that teachers can’t call him (in some states) because we have our own pension plan and so aren’t allowed to contribute to social security. I worked for nine years before teaching, and contributed to SS then, but could not apply because for the last thirty years I’ve taught, in a state with a self-funded (we pay it all) pension plan. He (the lawyer on tv) makes it sound like all we have to do.

My partial pension is ‘enough’ and we are fortunate in that. It takes thirty two years to reach the top benefit, but I’m close enough. There is no disability boost for teachers who are disabled after ten years of work …. a ten year pension is ‘enough.’ I am lucky i made it to thirty.

But I’m tired of that man leading everyone to believe that we can all get SSDI benefits.

I hate being in pain all the time. I hate not being able to be intimate with my husband. I hate that I can’t remember things. I hate that I can’t walk up stairs or long distances. I hate hating this disease!

Thank you for this. I feel a little better knowing I’m not the only one who hates what MS is doing to me.

Nicole, I celebrate your honesty. Though I can still “walk” (and I use that term loosely) with a cane, groom and bathe myself, drive, etc., I hate that I can’t work my garden anymore, can’t take a brisk walk around town and peek into store windows, can’t take a walk around the block with my husband and my dogs. Can’t clean my own house. Can’t concentrate deeply enough to finish writing my second book.

We each have our tragedies, we’ve lost something important. The thing we have in common, I think, is that we’ve been robbed of having the satisfaction of doing a thing ourselves, the joy of planning and physically completing a thing.

Please don’t feel guilty about resenting your losses and writing about them. It’s an occasional but necessary part of coping, yes?

Kim, I’m in the same situation as you. Still walking with a cane and various devices (AFO, HFAD, foot orthotics, knee braces). Still driving, though not sure for how much longer. Still working with the help of paratransit service, and telecommuting when I have the multitude of doctors appts, or just too tired or the weather’s too bad, etc. I hate that the black holes of memory caused me not to finish my doctoral dissertation. I hate that I needed a wheelchair to attend my son’s wedding in Negril last year. So…I really wanted to say I understand everyones’ plights in this MS fight, and I particularly understand your situation because it so closely mirrors mine. Fight on.

Bummer that you couldn’t finish that dissertation; after all those years of education and then not being able to finish the last hurdle, you must have spent quite a bit of emotional energy dealing with that one.

Here’s a little irony to make you laugh: The second book I’m unable to finish is a memoir about having MS, lol. Actually, that isn’t at all ironic!

I hate that I’m dog tired all the time.
I hate that my kids’ eyes tear up every time we talk about my illness.
I hate that my hands are numb and sore all the time. Yes, I can walk. Mine went to my hands not my legs (so far). Makes a job at the computer tough, tho.
I hate that I cannot do knitting or crochet anymore.
I hate that it is now moving up my arms, and steroid treatment did not do are darn thing (except make me sick).

I am glad I found your blog. You have practical, real-life views and comments on living with MS. As a newly-inducted member of “The Club”, I find this informative and supportive. Yes, even the “I hate” post.

Nicole, I have MS. I’m 47, have 3 grown children and a husband. I also have a very large family. No one really understands. No one has dealt with MS before in all of my family. My mom had an attack of RA 20 years ago and every time I mention a symptom she refers back to hers. I hate the comments like: I drank something with caffeine the other day and it gave me the shakes…..I bet that’s what causes you to shake. Or: if you weren’t so stressed out you would probably get well. Or: you can’t tell me anything…. I know what that feels like. I also hate that MS has caused me not to be able to do the work I did for years, ran our family restaurant. I hate that I can’t remember things. I hate that the heat gets to me fast. I hate that these things bother me and I think you have to be a better person than that and not let it get to you. I keep trying to wrap my mind around my new normal and I’ve been trying to do that since Aug. 9, 2010. Also, you did an awesome job venting! “I hate” as odd as this may seem, was a work of art!!!

Thanks Nicolle,
I think it is so important to take the time and acknowledge the reality of this MS experience. We can’t be “up” all of the time – it is just not natural. And it is more than OK to spend time making notes of what we hate about this journey we are on. Once I am done with my list (which is sometimes WAY longer than I would like too admit) I take a deep breath and just spend time being in that space for awhile. It is ok to hate what MS had brought us. I hate so much of this experience, and that is ok – it is real. And so is taking time to acknowledge what we do like (even love?) about this crazy, unexpected, unpredictable MS experience (which I can tell you also spend time acknowledging!) Thanks for sharing your experience – it was a great reminder for me!

I hate the mess I make on the floor when cooking – but I am happy
I hate falling in the pattern on a rug – but I am happy
I hate loking drunk, when I am sober – but I happy
I hate so many things – but I am happy and love life ;o)
sounds corny – well …

I hate that my friend is suffering!
I hate that I cannot be there enough for her.
I hate that this disease has caused her so much pain.
I hate that people stare at her.
I hate that there is no cure or magic drug to make her better.
I hate that my children will not know the person she was pre-MS.
I hate that she can’t see how beautiful and inspiring she is.

I hate that I have to apologize for recognizing just how awful living with this illness can be.
I hate that my income is a fraction of its former self and that my savings have been devastated.
I hate that I had to give up my dreams of professional accomplishment.
I hate that my non-virtual circle of friends has dwindled to so few.
I hate the impact on my family life.
I hate that my brain goes wonky at the store and have to leave early.
I hate not being able to run down the street.
I hate having to hold on to walls and furniture.
I hate having to have this conversation.

Hi Nicole, I’ve been reading your postings for some time…just observing and not responding until now. I do not have MS, but I have a friend with MS who has been confined to a wheelchair at a young age like you, I am feeling so much empathy for you, and since you and I are NOLA neighbors, I would love to take you on an outing some day (give your hubby a break)…..maybe when you’re feeling frustrated and alone? I am a single parent of a 20 year old daughter who is away at college. I am a nurse, living in Lakeview, working at home (medical record audits) so I have flexible during daytime hours. I’m just reaching out…..my email is lchaplain@ymail.com…..take care! Who love to hear from you…..Linda Chaplain

I know, I know, I know! I hate that I can’t stand the heat long enough to allow my 4 year old son to play outside. I hate that all his outdoor activities are done without me. I hate the isolation. My in-laws seem to be scared I might be contagious or they think my emotions, heart and brain are gone, along with the use of my legs. I’m through venting. I’m sure I could go on forever, but I’ll stop. This is just the tip of the iceberg. I don’t go here often, but sometimes it feels good to vent.

Nicole,
My name is Lisa and I have Primary Progressive MS. I totally relate to your letter. Two weeks ago I was in despair and luckily I kind of bounced back. I am having to be conscious of being happy. It just doesn’t happen much anymore. I have a very small support group and I really have a hard time with that. Friends fall by the wayside and leave me alone. If they only knew their call could make such a difference in my day. I get very lonely because no one visits. I have lost much of myself to MS and I hate on it all the time. I hope you feel better and thanks for posting. I am not alone.

I now have PPMS too, so you are NOT alone, though my increasing isolation causes me to think that too. When I gave up my career, my friends went with it. If my phone rings at all, its usually a bill collector! I love that fb allows me to keep in somewhat loose contact with my childhood friends, but hate that I have to say no so very often to gatherings. Friend me on fb, so you will have someone new to talk to!

I am not sure what to say except this is all so depressing! I miss wearing high heals, standing up straight, going for walks… feeling capable. I am not making pharmaceuticals wealthy as the only drugs I take are over the counter aspirin. I have SPMS and drugs really are not approved… that I know of… for SPMS. I have had this disease for 30 years + and I have posted before that I have had some improvement since I joined the MS study with Dr. Damadian and Dr. Rosa. (They think MS is the result of head or neck trauma creating the blockage in the flow of CSF through the cervical spine…. causing way too high CSF pressure in the brain…and creating the leakage of CSF in the brain.) They found CSF blockage in 4 locations in my cervical spine as well as a diagonal atlas (C1) disc and a rotatated C2 disc. I saw the scans … the pictures tell the truth.

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